Seven Years by Mary Beth

April 29, 2013

Shortly after midnight on Saturday my daughter and her friend gave me this beautiful card case to hold my business cards.

042813-1_B

Sunday was my seven year anniversary as a Breast Cancer Survivor. On Friday, I ordered a cake for myself to celebrate this day.  I don’t really drink, I don’t do drugs and I have never smoked and I still got cancer… so yes I eat sugar.

042813-7_B

I asked my closest friend in California, (who was literally the first person to hear the news as the Doctor called me at work) to come over and celebrate with me.

The day started out a little later than I had planned, I was running late for church and the chapel that I attend is very small and difficult to sneak in late. I decided to go to the church that we belonged to when we first moved here (and during my treatment) as their mass starts 15 minutes later. This parish had been talking and planning and raising money to build a new church when we became members. I do believe things happen for a reason and as I sat in the church I became very reflective on the past 7 years. I sat in the old church and prayed to heal and survive when I was sick. Now 7 years later I sat in this new church and so thankful that I am still here.
Cancer changed my life forever, not all bad, but changed nonetheless. I am healed on the outside, but sometimes the emotional side still creeps up on me. A few months back I had a “touch-up” procedure done. Before I left work for the appointment I looked at myself in the mirror and thought outwardly, most people that I meet now, have no idea that I am a cancer survivor. My hair has grown in and they can’t tell that it is much thinner than before. My eyebrows and my eyelashes have grown back and my eyelashes hold mascara again. My scars are not visible when I am dressed. People cannot see the effects of the aromatase inhibitors. But as I lay on the table with the greatest leopard hospital gown on… the tears started streaming down my face. I was back 7 years ago as they wheeled me into the operating room to remove a part of my body. I have learned we must allow ourselves to honor these moments as part of the healing process too.

042813-4_B

Today the tears streamed down my face again, so many emotions. Happiness that I am still here, gratefulness for all of the people that supported, prayed and helped me. Sadness for many of the people that I met because of the cancer that are not here anymore. I wrote and delivered a note to another close friend at that time, who had helped me with the kids. Our lives have now taken us in different directions. I sent a thank you text to Lou for supporting me during my treatment. We were close to divorcing in 2006 and then I was diagnosed. We decided to stay together. We tried for another 5 years, but it just was not meant to be.
After honoring those few moments of tears and emotions I was off to enjoy my day. I walked my favorite island and visited my friend who is still recovering from a freak illness. He congratulated me and then asked “did you think you would be sitting here 7 years later?” “Honestly, I was not sure, but my Doctors were.” was my response. They told me it would be 12-18 months of hell and then I would have a greater risk driving on the freeways.

042813-6_B

I treated myself to one of my favorite childhood candies while relaxing for a pedicure.

042813-3_B

My friend and her daughter came over and we celebrated our friendship… and the girls ate CAKE!

042813-2_B

The only part missing in the day was seeing my Dante. This was his weekend with his Dad and his future Step-Mother. Other than that…
I am a survivor.
I am alive.
I have so many amazing people in my life that care about me.
It was a great day.

cross-posted at marybethvolpini


A Husband’s Love

March 2, 2013

I was contacted through my personal blog by Cameron, a husband who became a caregiver to his wife, who like all of us who blog here became very ill.  He asked me to post his short story, and here it is.

Cameron’s Story:

 

Coming Face to Face with Reality

The gift of life is fragile and few may realize just how precious it can be. On November 21 of 2005, my life changed forever as it was the day that I had found out my wife Heather had malignant pleural mesothelioma. I went from husband and father to now a caregiver. Heather and I had just celebrated the birth of our daughter Lily several months before and had been planning our first holiday together as a family when our lives were turned upside down.

I was thrown into my new role as caregiver immediately. Our physician informed us about mesothelioma and what it entailed. He also gave us an assortment of treatment options, and I had to guide Heather toward making the first of many decisions. We ventured off to Boston to see Dr. David Sugarbaker, a doctor who specialized in mesothelioma.  This began a long a difficult journey to rid Heather of her cancer.

The months that followed were a blur as our normal routines turned into chaos. Heather and I had held full-time positions before she was diagnosed with the disease. As we began our battle together, Heather could no longer work, and I could only work part-time in order to care for her and Lily. We were kept busy with physician appointments, traveling back and forth from Boston and taking care of our daughter Lily. My list of duties exceeded my ability to get things done, and I quickly became overwhelmed with responsibilities. I was kept awake by endless worry. What if Heather died? Would we be able to stay afloat financially? Would I end up a broke widower with a young child to care for? Feelings of helplessness overcame me on many occasions, and I had to find strength within myself to stay positive for my family. Not only did I want to fight for Heather and be her rock, I needed to be just as strong for our daughter Lily.

Heather and I had a wealth of family and friends who helped us every step of the way with everything from words of encouragement to monetary assistance. Going through a difficult ordeal such as fighting cancer is painful and if anyone is kind enough to offer their assistance, you need to take them up on it. I learned the hard way that there is no room for pride or stubbornness in a battle with cancer.

The job of a caregiver to someone with cancer has an endless supply of highs and lows. One of the best pieces of advice I can give to others in my position is to never give up hope. There will be difficult moments, but you have to remember to dig deep and use every ounce of strength you have to remain positive.

Heather went through mesothelioma surgery, radiation and chemotherapy to fight mesothelioma and despite the odds, she was fortunate to conquer this horrendous disease. It has been seven years since her initial diagnosis, and I’m proud to say that she is cancer free today.

I was taught courage, strength and how to balance chaos throughout this ordeal, and I chose to go back to school full-time to study Information Technology. I graduated with honors and was chosen to speak at my graduating class. I relayed to my fellow classmates my difficult struggles and the importance of believing in themselves. No matter what life deals your way, you should never give up hope, and always keep fighting for the ones you love.  

 

Thank you Cameron for loving your wife, and for taking on the very challenging position of caregiver as we here understand what a tough job it can be. 

 


Mother with Cancer Lost Child Custody passes

November 28, 2012

Mother with cancer who lost custody of her children due to her cancer has lost her life.

“Legal and Ethical Issues for Healthcare Providers” textbook sites Alaina Giordano’s children taken away by her estranged husband and a Judge because she was diagnosed Stage 4.

20121128-035856.jpg

20121128-035910.jpg

20121128-035943.jpg

20121128-035959.jpg

http://www.facebook.com/friendsofalaina


Roll Call

November 27, 2012

Lets get everyone to do a roll call….  Holiday check in!

I’m good.  Healthy.

My mom is dying…  lung cancer/emphysema.

I’m missing my MWC friends…  particularly Susan.  Her passing took all the air from my sails.

Anyone else?


Shirley Temple child star mother with cancer diplomat : 1st Celebrity to admit mastectomy

October 24, 2012

Shirley Temple Black child star mother with cancer ::

1st Celebrity to announce she had a mastectomy ::

“the surgery is no longer regarded as shameful and secret”

i found this book in the palo alto children’s library today.

i’m so grateful to shirley 

mod*mom

(click images to read Shirley’s story please)


One Door Closes: Another Opens by Mary Beth

September 21, 2012
This post has nothing to do with cancer… but I think that this site can use an uplifting story…
I am so happy to be writing this story. My daughter was adopted at 2 days old. Her Birth Mother selected us from a resume that we compiled. We never met her. She was given two of the hospital birth photos.
 
We knew quite a few details about her family and medical history but no identifying information as the adoption was private. She was born in Pennsylvania, but the adoption took place in New York State. We were told that when my daughter was 18, she would be able to sign the adoption registry and if her birth mother also signed, the records would be opened.
Nina knew that she was adopted and we shared all of the information that we knew. All except one piece of information. When I received the paperwork I had noticed that the attorneys had forgotten to black out her Birth Mother’s last name on one of the bills. That is how I knew that part of Nina’s heritage was Irish. My feeling was that I would honor our agreement that we would not look for her and she would not look for us… until Nina was 18.  Nina always talked about wanting to meet her Birth Mother. Two questions that she always wanted answered were: Who do I look like? and Does she think about me?  Society is so accustomed to biology, people just naturally try to figure out where the resemblance is: do you look like your Mom or your Dad? Even in school, usually at the beginning of the year the kids always have to talk or write about their heritage.
Adopt means… to take as one’s own. They did take our heritage, but it does not mean that she did not wonder whose biology she was made of and what was her biological heritage.
Last year when Nina turned 18 she had wanted to fill out the paperwork and start the process. The year was quite traumatic for all because of our divorce. I told her when she was ready I would help her. My biggest concern as a Mother was to protect her. I was worried that if her Birth Mother did not want to be found it would be another source of abandonment and disappointment. Nina had decided she was prepared for that event, but that she had to try to find her. I decided I would let Nina go through the legal procedure and if for some reason the records could not be opened then I would hire a private detective to find her and make sure that she wanted to be found. I had even done a few internet searches but nothing concrete had come up.
The weekend of September 7th was a very difficult weekend for Nina and her paternal adoptive family. She was very upset and crying most of the weekend. Mean things had been said by both sides. As a Mother, you want to make it all better, but I just did not know what else to do, except pray. I said a few extra rosaries. Sunday after mass I always light a candle at the Statue of Our Blessed Mother and ask her to watch over our family. This Sunday I asked for extra help for Nina, to relieve her pain.
When Nina came home from work, she sat down on the couch and was so exhausted from the emotions of the weekend. She was so sad. Dante was playing his video games. For some reason, I decided to pick up my phone and put her Birth Mother’s last name into my phone and the word ‘adoption’. An “adoption connect” site popped up and the 7thentry down read:
25-Mar-2009
I am searching for my daughter who was born June 7, 1994. She was born in St. Mary’s, PA but the adoption took place in Buffalo, NY. I am her birth mother and want to find her. She has a birth mark on her forehead. I was too young to care for a child, but have never forgotten her and hope she was given the life I could not give her.
 
 
I could not believe my eyes. The only incorrect piece of information was the year. I put my phone down. I told her that we had to believe and trust that God was watching out for us. I could not tell her why I felt this way, at this moment but I would tell her when I could. I started to cry and both kids looked at me strangely. Nina asked if it was a good thing and I said “yes”. I was waiting for Dante to go to bed, so I could have some private time with Nina to share this news. She was so exhausted that she went to bed before him.
When the house was quiet, I went in to wake her up and I asked her to bear with me as I told her the whole story. I explained how I knew that she was Irish and why I did not tell her her biological last name. Then I read the post to her. She started to cry. When I first read the post my biggest concern was alleviated, “does her Birth Mother want to be found”. When Nina heard the post, one of Nina’s questions was answered, “does she think about me?”
Nina hopped out of bed and turned on her computer. She registered on the site and pressed the correspond with this person button. She wrote:
If your name is Melanie, and your Mom’s name is MaryAnn and you gave me the name Leila at birth and your birthday is October 28. I am your daughter. I have a birthmark on my right temple.
 
This message was sent at 10:30pm on a Sunday night. One guess as to who did not sleep much that night? The next day at about 11:00am, I got a call at work: “Mom… Melanie responded” that started a whirlwind trail of emails and information and 19 years of questions answered on both sides. Melanie sent a photo of herself. The biggest question of all. “Who do I look like” was answered. Nina looks just like her birth Mother with the exception of her nose.
Wednesday was going to be the first phone conversation. As I was driving home that night I thought … how do I ever thank Melanie for the gift she gave me? I started to cry, which is not the smartest idea while traveling on the freeway. When I got home, they were talking and Nina let me speak with Melanie. I told her that I do not know how to thank her and she said the same to me. We talked for quite a while and when we were done I told her that I loved her. I don’t even know her, yet I love her. It was so nice to hear the two of them talk and laugh, to hear pure pleasure in my daughter and tears of joy.
In the same day, one door shut and another opened on a whole new family. She has a Birth Mother, a Birth Father, a Step Father, a full biological Brother, 1/2 biological Brother and Sister that are twins, a birth Grandmother and a birth Great-Grandmother an Aunt and an Uncle and two Cousins. She is emailing, texting and talking with them every day. We are planning a trip to meet all of them.
Melanie said when she read the email, she was speechless. She sat stunned. Her husband came downstairs and asked her what the matter was? She said that she could not speak, she just turned the laptop towards him and let him read it for himself. She had written the post to find Nina 3 ½ years ago! Both Nina and Melanie agree that this week has been surreal and amazing at the same time. Two of the best things that I could hear Nina say were “Thank you Mom” and “They love me and they don’t even know me.”
So many prayers were answered that day…
cross-posted at marybethvolpini.com

Are YOU Dense?

September 12, 2012

i went to a talk by Senator Joe Simitian.

He needs more signatures to get California Governor Jerry
to sign a law that adds a sentence to Mammogram results,
that inform a woman whether she has dense breast tissue.

this is already a law in 4 states.

“Dense Breasts” make detecting cancer via Mammogram unlikely,
because cancer and dense breast tissue both show as white.

BI-RADSThese  mammograms are of the 4  grades of breast tissue density. (left to right) least dense to extremely dense.

Over the past decade, peer reviewed scientific studies have demonstrated that mammography misses breast cancer at least 40% of the time in women with dense breasts

Additionally, the research has shown that by utilizing adjuvant breast screening tools, detection of early stage breast cancer can increase up to 100% for women with dense breast tissue. By failing to enact life saving screening protocols for women with dense breast tissue, cancers are detected at a later stage than necessary when least treatable and survivable. The impact on the health care system is also significant as a later stage diagnosis is 13 times more costly to treat than an early stage diagnosis.

Breast density is one of the strongest risk factors associated with breast cancer

According to the National Institute of Health and 18 other studies spanning 8 countries, breast density is recognized as one of, if not the strongest risk factor associated with development of breast cancer. Breast density represents a stronger risk factor than age or having a first degree (mom/sister) relative with the disease. Studies have found breast density increases the likelihood of developing breast cancer between 3.6 and 18 fold.

There is currently no protocol mandating physician disclosure of breast density to patient

Public safety mandates that the government enact a policy that will require health care providers to start telling women the truth about the effectiveness of their mammograms.

The medical community has failed to enact a standard that simply requires doctors to tell women that mammography can miss more cancer than it detects in women who have dense breasts. As a result, women with dense breast tissue are being denied access to an Early Breast Cancer Diagnosis. A policy change by the government is necessary to ensure that patient safety becomes a high priority and that the communication of Breast Density to Women is standardized across the country.

When kept in the dark about this critical piece of their own health risk, women are denied the opportunity to partner in their breast cancer surveillance

Are You Dense Advocacy is advocating for equal access to early cancer detection for the 40% of American women with breast density. An amendment to the Mammography Quality Standards Act’s existing “lay letter” reporting requirement, to include information about a patient’s individual breast density, will give women critical health information about themselves. Without this information, women – kept in the dark about their own physiology and risk factors – can hardly be considered informed participants in their health surveillance.

This map shows 4 pink states passed the law, 12 red states endorsed a bill, 6 blue states working on a bill , 32 states have no action: interactive map of  Breast Density law progress

Cancer Patient care providers profit from late stage detection of cancer: Oncologists, Surgeons, Radiation technology…
We need laws to protect us from useless diagnostic radiation + those who stand to profit from late stage cancer. This law is a step in advocating for better early detection methods for all cancers.
Notification + further testing could have detected my cancer while breastfeeding + saved me from late cancer diagnosis, so i personally know it will save lives.
I almost died, because I was “dense” + believed in Mammograms + 2D ultrasound, to detect cancer in my 3D breasts of dense tissue!
-3D ultrasound  should be standard
-MRI’s + fine needle biopsies should be used for high surveillance
We need earlier detection now + all it takes is sending an email now…
Please send an email urging your State Representative to pass a Breast Density notification law using the form on  AreYouDense.org

mod*mom via AreYouDense.org